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Report 47: User involvement in adult safeguarding

An introduction to user involvement

Involvement should be a collaborative venture where groups work together to increase people's control over their lives…

Overview

Health and social care has a well established ethos of involving people who use services in their own care, and in the development of services, but a scoping exercise by SCIE found little evidence of user involvement in adult safeguarding.

This report was commissioned to address that identified gap in knowledge. It draws on literature on the involvement of people who use services in social care generally, and wherever possible, literature specifically about user involvement in safeguarding adults, complementing this with examples from practice.

The report examines principles and values underpinning user involvement, and summarises research findings on what helps and hinders involvement in safeguarding adults. It describes a range of models of user involvement in safeguarding at a strategic, individual and community level, and illustrates these using case studies. It concludes with recommendations on how to implement and improve user involvement in safeguarding adults work.

The report is not intended to cover carer involvement in safeguarding adults.

This section looks at the values and principles that underpin involvement of people who use services in health and social care, and goes on to consider a range of influences that have driven the involvement of users.

Principles behind involvementOpen

The involvement of people who use services has become integral to health and social care policy in many countries. According to Staniszewska, this is due to social and political goals of participative democracy, public accountability and openness.(1) However, the quality of involvement is likely to depend on the principles and values that underpin it.

According to the literature about involvement, key principles and values in involvement include: respect, equality, genuine partnership, social inclusion, empowerment and choice. (2, 3, 4), as well as privacy, confidentiality, independence, and being treated as an individual.(5) Research has found that people who use services value rights and independence, along with (not instead of) support.(6)

Involvement should not be just a technical exercise, but have real goals for change:

[involvement] needs to… build on and advance values, like those of the social model of disability and independent living, to secure people's empowerment. Involvement should be a collaborative venture where groups work together to increase people's control over their lives…[this] should be a goal of all involvement – and it's the one service users talk about most – seeing real change result from getting involved on equal terms.(7)

Researchers have shown a tension between differing involvement approaches, contrasting a consumerist approach with one that leads to wider power sharing.(8, 9) Lewis says:

It has been widely argued that meaningful participation for service users cannot be achieved through a consumerist approach that fails to engage with imbalances of power and divergences of interest between users and providers of services.(9)

Users driving involvementOpen

A number of commentators argue that the impetus for involvement came from people who use services. Beresford and Croft describe movements 'of disabled people, older people, mental health service users/survivors, people with learning difficulties, people living with HIV/AIDS' and show how these groups challenged conventional practice and 'welfare' philosophies.(10) Over time these movements have influenced professionals' working practices and ultimately led to policy changes within professional bodies and government.(11).

Legislation driving involvementOpen

Beresford and Croft draw attention to the influence of human rights legislation on involvement policies, including the Disability Discrimination Act (DDA) 2005, which brought in the Disability Equality Duty and the Human Rights Act.(10) Subsequently, the Equality Act 2010 has replaced most of the DDA, but the Disability Equality Duty is still in force.

Since 2001 there has been a statutory duty in the UK to involve the public in health and social care under Section 11 of the Health and Social Care Act 2001. This duty was updated and more clearly specified in the National Health Service Act 2006 and clarified in Department of Health guidance (12).

Since April 2009, all councils and some other public bodies have a legal duty to inform, consult and involve local people under the Local Government and Public Involvement in Health Act 2007. Councils must consider providing information to, consulting with and involving local people in decisions about how it provides services, and the opportunity to be involved must reach a wide range of local people who would be affected by planned changes.

Policy driving involvementOpen

An emphasis on user involvement has been present in national health and social care policy for some years. The white paper 'Our health, our care, our say' promised a 'strong voice for people using services and for local communities in the way in which the whole health and care system is designed and works'.(13) The concordant 'Putting people first' set out a shared cross-government vision for adult social care, which aimed to be 'the first public service reform programme which is co-produced, co-developed, co-evaluated and recognises that real change will only be achieved through the participation of users and carers at every stage'.(14)

The coalition government is in the process of updating the policy and legislation on public involvement. Its white paper on the NHS, 'Equity and excellence: Liberating the NHS', sets out an approach to partnership for patient-centred care, stating that: 'We want the principle of "shared decision-making" to become the norm: no decision about me without me'.(15)

User involvement in safeguardingOpen

The importance of user involvement is reflected in policy statements on safeguarding. Consider, for example, the Wales interim policy and procedures for adult protection which sets out the following value base:

'Independence: to think, act and make decisions, even when this involves a level of risk.

Dignity: recognition that everyone is unique, with intrinsic value as a person.

Equality: the right of people to be treated no less favourably than others because of their age, gender, disability, sexual orientation, religion, class, culture, language, race, ethnic origin or other relevant distinctions.

Privacy: the right of the individual to be left alone or undisturbed and free from intrusion or public attention in their affairs.

Choice: the right to make choices, and to have the alternatives and information that enable choices to be made.'(16

Braye et al studied the arrangements of safeguarding adults boards in England and found that they set out their key principles as: 'recognition of and respect for human rights, autonomy and empowerment, equality, proportionality, confidentiality and participation'. They add that 'capacity' is recognised as a key principle in determining respect for autonomy in decision making, and 'dignity' is a factor which drives the work of empowering people to choose a life free of abuse, and that, 'it is recognised that a duty of care in the context of risks to others may require intervention to be pursued'.(17)

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